Eye cancer in a child (retinoblastoma) (needs checking)

Symptoms

Common signs:

• White glow in the pupil
• White glow in a child's pupil in photos

Less common

• Crossed eyes
• Red eye

When to get medical care

Causes

Changes in a cell's genes that make it grow out of control. Most happen by chance or with age; some come from smoking, infections, or inherited genes.

Does it spread or run in families?

• Cancer isn't contagious. You can't catch it from someone.
• It can run in families. Tell your doctor if a parent, brother, or sister has it.

Who is more likely to get it

• Family history

Diagnosis

Tests look for the cause. Most people checked for these symptoms don't have cancer.

Questions you may be asked

• How long you've had symptoms
• Family history of cancer
• Smoking and alcohol

The exam

A physical exam.

Tests

Tests, if needed:

• Eye exam:

Treatment

Get the symptoms checked rather than waiting. If cancer is found, a cancer team makes a plan with you.

Self-care

• Write down your symptoms and when they started
• Bring someone with you to appointments
• Ask for a copy of test results
• Quit smoking: it helps at every stage

Treatment saves most children's lives.

Prevention

To lower your risk or find it early:

• Eye checks at well visits

Which doctor treats this

• Start with your child's pediatrician.
• They may send you to a pediatric specialist: an oncologist (cancer doctor), often with a surgeon and a radiation doctor.

Living with it

• Keep a simple diary of symptoms, triggers, and medicines to bring to visits.
• Bring a list of your medicines and questions to each visit.
• Ask for a survivorship care plan when treatment ends.
• Gentle activity, like walking, can ease tiredness.
• Children may qualify for free early intervention services before age 3, and special education help (an IEP) at school.
• Long-term illness can affect mood. Tell your doctor if you feel down or anxious.

Support groups and helplines

• American Cancer Society: Help 24/7 at 1-800-227-2345, rides to treatment, and support programs.
• National Cancer Institute: Cancer Information Service: Free answers from cancer information specialists: 1-800-422-6237.
• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Back to school, work, or sports

• Most people can keep working or going to school.
• Ask about changes that help, like extra breaks or a flexible schedule. Workers may be covered by the ADA. Students may get a 504 plan.

For caregivers

• Learn the warning signs and when to call the doctor or 911.
• Keep a list of your child's medicines, doses, and doctors on your phone.
• Tell teachers, coaches, and sitters what to watch for and what to do.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Cancers found early are much easier to treat, and treatments keep improving.

Support is available: ask about social workers, nutrition help, and support groups.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse
• Past test results

Questions to ask

• What tests do I need?
• If it's cancer, what stage is it and what are my options?
• Are there clinical trials for me?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Eye cancer in a child (retinoblastoma) (needs checking)